Tiger, tiger in our tree. I see him looking out at me. Who knew, when kitten found that he….Would make his home a Christmas tree?

When first he shimmied up the tree…He was a kit, 2 oz, pound three,…Now 15 pounds, give or take…His climb doth cause the tree to quake.

He is the smartest cat of all…and with his polydactyl claws..He knocks ornaments off with fury…Picking them up makes me weary.

Tiger coos with delight…As he climbs up past the lights…Then hubby cries out with a mighty shout…Tiger, from the tree get out!

Then Mr. Tiger takes a flight…Over all the Christmas lights…Like a sparrow, like a robin…He just makes those lights go wobblin’

Mr. Tiger, in our tree…Why did you climb up so high? Did you think you are a bird? Did you think that you could fly?

Tiger, tiger, in our tree…Again I see him look out at me…Who knew, when kitten found, that he…Would make his home a Christmas tree?

*****

This is a parody/take-off of a famous poem by William Blake, Tyger, Tyger. Some of you may have read this work in High School or college. I published this last year as well, but I am so taken with its silliness that I am reposting it.

When Will was four, an alphabet soup of diagnoses followed his name: SLI (speech and language impaired), SID (sensory integration disorder), FMI & GMI (fine and gross motor impairment), BI (behaviorally impaired), MI (mentally impaired), etc. Amazingly, he did not fit the profile for ADD or ADHD. Acronyms had to be used in part because there was not enough room to type his diagnoses on the Individual Education Plan Forms.

Eight weeks before our visit with Dr. Smith, a thick packet of paper arrived in the mail.

Half of the papers were Authorization for Release of Information forms. I was instructed to sign and date the forms and return them, along with a list of all the doctors, therapists, and schools involved with Will’s care.

The other half was a Parent Reporting Form. The first page consisted of demographic questions (Name, date of birth, address, parents’ name, etc.).

The second part of the form was a long list, with instructions to check off the items that pertained to Will. The items on the list varied from the mundane (preterm birth, full term birth, weight at birth, ethnic background, 1st language, etc.) to those which identified characteristics due to developmental differences.

Some of the significant items for Will, along with my comments:

Unusual fixation or fascination with objects – Will was utterly fascinated from a very early age with lights. When he was a baby, he would twist himself around in his high chair to to view the lights through his half-shut eyes, looking through his eyelashes. I worried at the time that he might do psychedelic drugs when he was older. Later, when he could actually reach light switches, he turned them on and off constantly. It was like a disco at our house. We moved the furniture away from light switches. That helped until he was tall enough to reach the light switches. He made it his business to find out where the light switches were in every building he entered. When he was three years old, he escaped from the nursery at church and found the light switches to the sanctuary. The lights flashed on and off during the Sunday School class. A deacon came out to discover a giggling three year old playing with the light switches. After that, they made sure the doors to that bank of switches was always closed.Lack of eye contact or qualitative difference in eye contact. Will not only had very fleeting, if any, eye contact; he actively resisted efforts to encourage or force eye contact. My mother would hold his face in an effort to get him to look at her when he was naughty. It was futile. Once, when we were talking to his preschool teacher when he was eight years old, he twisted his body in all different directions to avoid making eye contact. We instructed him in eye contact and practiced it. He eventually made eye contact with his father and me, but nobody else. He could read our faces, but he had extreme difficulty reading the faces of strangers. We found that forcing eye contact completely obliterated his ability to listen, so when we needed to emphasize behavior changes, such as not running across the street, we sat next to him and talked to him.

Sensory differences. Did I say lights? Also, he was highly sensitive to touch. He was extremely ticklish. He couldn’t stand any tags in his clothing, and he did not want to wear knit clothing. One of his therapies was brushing him down with a soft brush to improve his tolerance to touch.

Impaired social interaction. He could not initiate and/or maintain interaction with children his own age. He had extreme difficulty making friends. He screamed if any of them came near him. As a result, he was very isolated.

Constant talking. He could talk all day about Power Rangers long, long after I had lost interest in the subject. Later it was video games. And still later, it was computers.

Insistence on sameness. He always had to have the green plate, the green glass, the green toys. He would wear green clothing if he had the choice. We often gave him the choice because we had other battles to fight. He became upset if we took a different route to church or the store.

Difficulty transitioning from one activity to the next. Will would scream if it was time to change activities before he was ready. Changing from story time to outside recess was especially problematic.

Perseverative behavior. Will would open and shut doors over and over again. We had to put spring loaded latches on all the doors in the house because we were afraid that Will would shut his sisters’ fingers in the door.

Articulation difficulty. Will was difficult to understand.

High pitched and sing-song voice. Will’s voice was very high pitched. He also talked in a sing-song tone of voice. His inflection was off. In American English, the pitch of the voice typically rises at the end of a question and goes down at the end of a statement. Will’s sing-song inflection affected his intelligibility.

Gross motor delays and hand eye coordination. Will couldn’t bounce a basketball. He never learned to ride a bike.

Fine motor delays. As a result of his fine motor delays, Will took much longer to learn to tie his shoes and cut his own food. His writing was labored, slow, and very difficult to read.

Etc., etc.

The last part of the Parent Reporting Form consisted of several essay questions. Do any other members of Will’s family have developmental issues? Describe a typical day in the life of your child. Do you have any other concerns about your child?

I spent three hours checking items on the list, and writing out the answers to the essay questions. Toward the end, tears rolled down my cheeks. On one hand, it had taken three years to get approval from our insurance company to have Will evaluated by Dr. Smith. On the other hand, I felt that I was betraying my son by telling the truth about him. Because I loved him with all my heart, I wrote the truth, unadorned. Then I sent the whole packet back to the doctor.

Within 20 minutes, Dr. Smith diagnosed Will with extremely high functioning autism (HFA).

Every year I had to check off a list of characteristics and write answers to essay questions to prove that he still qualified for autistic impaired services. Every three years, I had to fill out a more extensive list. I filled out lists like this for his sister as well. Sometimes I felt very discouraged.

Will is an adult now. He still has autism, but I no longer fill out any lists or write short essays. I have always believed God has a plan for him – that is our encouragement to him and to ourselves. He has a very good job as a web design consultant for a large corporation. He cooks, drives, and keeps his apartment reasonably clean.

All the checklists and essay questions were worthwhile. Truth telling, unadorned, turned out to be for the best.

Hillary Clinton famously said, “It takes a village to raise a child.” I agreed with her then, and agree with her more as I look back at our journey. It is even more true when raising children with disabilities.

Here is a partial list of our village; I will be adding to it throughout the day:

Our piano teacher who taught piano to our kids for 10 years, starting with Will. I asked her if she would be willing to try to teach Will, even though he had been placed in special education and could not yet read at seven years of age. She said yes. After a year of teaching piano with a non-reader book (there are such things), she told me that he had an aptitude for music. Then we added Mary for the purpose of strengthening her hands and improving fine motor skills. Then we added Patty because she wanted to do what her brother and sister were doing.

The 2nd grade teacher who after a year of teaching Will, asked that he be placed in her class for 3rd grade (she moved up a grade) because she thought she had made real progress with him and could make even more progress the next year. This was the year he learned to read, and his reading exploded up the testing chart. By the end of 4th grade he was reading at an 11th grade level.

The Social worker who suggested that Will could possibly be in band in the sixth grade, in part because he had had four years of piano lessons by then and understood music. He prepared the band teacher for what he should expect.

The teacher consultant who was instrumental in placing Will in the gifted program in our district because he was clearly gifted, despite his autistic tendencies which appeared to outsiders to be shocking immaturity.

The band teacher who stuck with Will for 7 years from middle school through his senior year in high school and, as Will gave Mr. G credit in his Valedictorian address, for teaching him to work hard on his music and always do his best.

The youth pastor who cared for our kids and included them in many activities, including mission trips to Tennessee to prepare a camp for needy children for the summer. The youth sponsors who mentored our children.

My sister who babysat our children for weekends at a time twice year so that Ralph and I could get time away. She understood that they needed a sitter well into their teen years.

My mother and father who bragged about our kids to anyone who would listen.

The special ed director at Mary’s new district for the regional autism program who suggested that Mary be signed up for the Reading for the Blind program, because he sensed that although she could not read, she could understand narrative and that would be prepare her for reading in the future.

The teacher’s aid who saved Mary from choking, and who also helped her develop a reading “bank” of words that she could recognize by sight. (Mary could not learn by phonics due to severe auditory processing deficits and speech impairments). This required tedious repetition and perseverance. But by the end of 7th grade, Mary had a word bank of 180 words. By the end of 8th grade, she had a word bank of 600 meaningful words. In 9th grade, Mary read The Lord of the Rings, with the help of tapes, and the books themselves. After that, Mary began checking books in that genre out of the library, reading 30 or 40 books a year.

When we parents of children with disabilities meet in doctor’s offices, conferences, workshops, therapy sessions, we frequently share our experiences. The tales of joy and woe come pouring out. We open up about the progress our children have made, the uneasy concerns, set-backs, and our frustrations. We comfort each other. We learn that we are not alone. Our eyes are opened to battles that lie ahead.

During the times that I was fighting my most exasperating battles, I was sure that I would never forget.

However, this morning as I was talking to my youngest daughter, Patty, on the way to college (a daily drive of about 45 minutes five days a week), I realized that I had indeed forgotten one of my war stories.

Eight years ago Mary attended the regional autism program in our county from the fifth grade through high school graduation. She was bused five days a week to the second largest school district in our county. In high school, she was mainstreamed in most of her classes with regular education students, with a one hour class each day for social skills training, occupational therapy, and speech therapy.

In the middle of her junior year in high school, Mary’s guidance counselor told me that Mary would not be able to graduate in with the class of 2005 if she did not take a summer class or a class at the community college. I told her that I was confused. Mary had gone to school 6 hours a day, five days a week since the beginning of high school. She had taken 6 classes every semester.

I talked to our teacher consultant in our home district and she agreed that Mary was not being given credit for all of her classes and she intervened to no avail. The guidance counselor stood her ground and would not budge. She insisted that Mary needed to take an extra class. I went to the school principle to complain about this after getting nowhere with the counselor. My daughter’s autism teacher told me that he was embarrassed that I had gone over the counselor’s head. He was no help at all.

The guidance counselor told us that we had to have Mary take a summer course with them, which would cost over $300. Or Mary could take a college course, which they would pay for if it was a course that they didn’t teach at the high school. I said that they should pay for it regardless because they had messed up her credits.

The summer class was not possible due to Ralph’s work schedule and my work schedule. We tried to find a class at the local community college that was not taught at the high school. However, the high school had 2000 students, and taught a large variety of courses, so that was impossible. We decided along with Mary that it would be a good idea for her to take a night class in Business English, because those credits would also count toward her college degree.

One night a week for 15 weeks, we took Mary to the community college, and waited in the parking lot while she was in class. She passed the class with a B, which was excellent for someone with autism and learning disabilities. At the time, her English teacher in the high school told us that it would be a waste of money for Mary to go to college.

It’s a amazing thing how things look from hindsight. We did not prevail in this long drawn out battle. I was so frustrated. However, it turned out that the counselor was wrong. Mary did not need those extra credits. She had completed two years of a computer accounting class at the county vocational school in one year with A’s and A minuses. She excelled in accounting – it was all numbers. One of the features of autism can be intense focus. While others were socializing, she was working. She received two years worth of credits in that year. In addition, she had the three credit college course that was added to her high school credits because the counselor insisted that Mary required an extra class.

When Mary started her classes at the community college after high school graduation, she was already familiar with the campus and with the pattern of a college class. Even though it seemed unfair and was very inconvenient at the time, it turned out to be a blessing.